The Health Data for Action (HD4A) program exemplifies the Robert Wood Johnson Foundation’s commitment to facilitate the development and use of evidence to support policy decisions. Managed by AcademyHealth, the Health Data for Action program reduces data access barriers by making valuable health data available to researchers to answer timely health research questions. This program is also designed to help researchers develop the skills and confidence to share findings with policy makers. As a health services researcher with a mission of generating policy-relevant evidence to support drug access and coverage policy decision making, the Health Data for Action program was an excellent fit.

I received a Health Data for Action grant in 2019 to study the impact of patient out-of-pocket cost for insulin on patient adherence to insulin. In a unique arrangement with the data provider, OptumLabs, I was paired with a team of talented analysts. Over the next 12 months, we conducted complex analyses of deidentified patient-level data identifying that high average out-of-pocket costs for insulin were associated with lower insulin adherence in commercial and Medicare Advantage patients; findings that we seamlessly disseminated to scientific and clinical audiences.

Making Health Data Relevant for Policy Action

While health research often seeks to change clinical practice, we also wanted to influence health policy with this project, given its relevance to national policy discussions about insulin out-of-pocket limits. Thus, we examined $35, the limit set by the voluntary Medicare Part D Innovations Senior Savings Model, which was being rolled out at the time of our research. We also included a category of $0 given the prevalence of value-based insurance designs that seek to reduce cost as a barrier to diabetes treatment; $20 – a limit proposed in house legislation that sought to set limits on insulin cost to patients regardless of insurance status [Matt’s Act, HR 7722, 116th Cong, 2nd Sess (2020)]; and a high level of $50. We looked at the association between insulin out-of-pocket cost per 30-day supply and the incidence of an extended gap between insulin refills, which is indicative of poor adherence. We found that these gaps were significantly more likely to occur when insulin out-of-pocket costs exceeded $35 per 30-day supply.

Rethinking Evidence Communication

At this time, national level policy discussions to increase the number of individuals who benefit from an insulin out-of-pocket cost limit were gaining momentum. It was time to make good on our commitment to communicate findings beyond researchers and clinicians. 

Discussing the evidence and implications with politicians, staffers, or reporters, on the other hand, petrified me. Yet, AcademyHealth was prepared for this reaction. Over the course of the funding, AcademyHealth staff led multiple sessions for Health Data for Action grantees to build our skills and capacity to disseminate findings to audiences who need evidence to improve health and health care. These sessions helped me develop communication planning and execution skills, including targeting relevant audiences, developing actionable messages, and communicating findings effectively and concisely to an educated but non-expert audience. I thought, ‘What do you mean no acronyms?’ and ‘Should I really go light on the methods?’ I had to rethink everything I knew about communicating evidence.

The Road to Action

Prescription drug costs in general, and insulin out-of-pocket cost limits specifically, were widely discussed topics on the Hill in the 2022 legislative session, and the time to share this evidence had aligned perfectly with the timing of the study. The team at AcademyHealth stepped in to provide specific assistance and direction, in consultation with communications and policy teams at my institution. To be broadly informative, we developed a policy brief that outlined the evidence in context of the topic (versus specifically proposed policies). The AcademyHealth Government Affairs team then reached out to their contacts on the Hill and scheduled brief calls. I scripted a brief overview that the AcademyHealth team critiqued, and I practiced until I could give the pitch without acronyms or digressing into study design and statistical analyses details. Two years of research and planning were being boiled down into a series of 20-minute calls.  No pressure.

And It Was Awesome

The individuals we spoke with, congressional and committee staffers, were engaged and informed. They asked great questions. They understood the implications of our study and its importance to policy decisions about out-of-pocket caps on insulin. Now there is a $35 cap on insulin for all Part D beneficiaries. I cannot claim that our research drove this policy. However, it does provide data and evidence from independent researchers in support of an insulin cap of $35 or less. It also provides evidence, anecdotally at least, that this researcher can communicate in plain English.

McAdam-Marx's headshot

Carrie McAdam-Marx, M.S.C.I., Ph.D., R.Ph.

Professor, Department of Pharmacy Practice and Science - University of Nebraska Medical Center

Carrie McAdam-Marx, M.S.C.I., Ph.D., R.Ph. is Professor and Director of the Social and Administrative Pharmacy... Read Bio

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